Saturday, May 02, 2009
I received this pithy note from Jim Donovan who is heading our "It takes a whole village" research process. He is a genuine expert on called, "Anthropological Action Research" and that is what we are doing. This kind of research focuses on a few persons and does in depth, interpersonal interviews about some subject. For example, in looking at products, they would look at who eats chocolate, why they eat it, when they eat it and so forth.
Our research is choosing twelve families with special needs kids. We will visit them and ask all sorts of questions about their strengths, needs and stresses. Although it is obvious to everyone that a sickly member effects the entire family rarely has anyone looked carefully at how they are affected or what kinds of support they want and need. In fact, the Medical Model essentially ignores the parents and family members to focus exclusively on the child who we call, the "Identified Patient".
By ignoring parents the system refuses to engage the people with the most expertise. Parents live with and think about their child all day and all night. They know what works and what will not work to help the child.
Failure to follow medical advice is one of the greatest barriers to being helped by professionals. Yet, many who practice a form of the medical model ignore the very people who must agree with the treatment; parents.
Sweeten Life Systems respects and values the entire family and will do our best to engage them in the solutions to their problems.
Here is Jim's note to me.
I know Buckminister Fuller is one of you favorite persons.
When reading the book ‘Crowdsourcing’ he was quoted. “To build a new system you don’t compete with the old one, you build a new system that makes the old one obsolete.” Maybe this is what we are facing with the special needs families.
That is it! The entire system must change. Pray for us to show the world how to change an inadequate system.